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From Vietnam to Ventilation

  • Part 3

      9 October 2025

    We are still so incredibly humbled by all the help, love and support we initially received (and still continue to receive!) How we got so lucky to have so many unbelievably spectacular folk in our lives, i’ll never know. I feel so grateful in knowing that that GBS patients make a full recovery but my heart goes out to families who are living the hospital life and don’t get to have that comforting knowledge, or worse. Hospital life is tough going. It tugs on every emotional fibre in your body and has you digging deep to get up your own personal mountain. So to those families I am sending strength, love and thoughts of support your way because without all we received, our journey would’ve looked a lot bleaker and no one should have to be in that position.

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  • Part 2

      9 October 2025

    As of this week, she has returned to school on a limited capacity. Her friends, teachers and school staff in general have all been pretty brilliant - very accomodating. They’ve all been going out of their way to make sure everything is as it needs to be for her to manuvoer around and be here comfortably, making sure she feels included over excluded. Currently, she’s sitting beside me in the library, doing her calculus. Her hopes are to complete some internal work and sit some of her exams at the end of the year. Again, moving mountains.

    And when we aren’t out and about, she still lives at the hospital. The doctors, PT and OT are all happy with how she is progressing. Her current therapy mainly consists of fine motor skill tasks and a standing machine. It takes a hot minute to get to completely upright in the machine as her calves feel the pull of the stretch, her feet tingle from the blood flow of being upright and her ankles need to flex to get in to a regular, comfortable, flat-footed position. But once she gets there, she typically stands for 30 minutes. Again, it may not seem like much but seriously, mountains I tell you!

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  • It feels only right to come back here, 3 months on, to update you - Part 1.

      9 October 2025

    Looking back through the photos and reading updates, I can really see how far she has come. When I landed in Vietnam Auri could barely move, a small head roll side-to-side and minimal arm movements were it. As of now, she still can’t walk and her hands are still at times a bit useless, but she can do so much else. She can sit up, lay down and transfer herself from her bed to her wheelchair and back again independently; she can do the same for the car (we’ve got this down to a fine art now!); she can sit for longer periods of time; she can feed herself, brush her own hair and fill up her water bottle. These may seem like such small, menial tasks but having been to ‘mostly paralysed’ and back, these are feats! Every day tasks are figurative mountains and this kiddo is out here moving those mountains, scaling them even and should she find herself at a roadblock, she finds another way. Watching her be so resilient as she learns to adapt and find new clever ways to do and achieve things, well, it’s incredible and sometimes stupidly hilarious.

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  • Learning how to Hi-5 again :)

      3 August 2025
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    There’s no PT or OT in the weekends so I was it. I stuck m&ms to her hands, neck and face and made her pick them up to eat. I had her pinch them between her thumb and each finger. I even loaded her lunch and dinners on to her fork and had her pick it up, eat it and put the fork back down. It wasn’t easy and it wasn’t perfect but she did it. And that was hi-5 worthy!

    On Friday the neuro commented saying he noticed a flicker or movement in her right eye muscles when he asked her to look down. Since day dot she’s had total ophthalmoplegia so this smidge of movement is brilliant as it means her eye muscles are slowly coming back online. Today I noticed her right eyelid was open a fraction more than usual (more of her pupil was visible.) We’ve had to keep reminding her to blink as even when she does, her eyelids don’t always close all the way her her eyes have been getting dry and irritated - today they were quite red. But I put that down to her scrolling and swiping away on her phone (as best she can), sending voice notes to her friends and liking posts. Teens man.

    Tomorrow she gets her first wheelchair. It’s exciting (really exciting actually!) to think we are a day away from taking her outside, into the sun and fresh air! It’s been almost four weeks since Auri has been outside (apart from ambulance and medical jet transfers) so it’s definitely time.

    I want to give her the world but the sunshine is a perfect place to start. Hopefully the weather cooperates…

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  • 26th July

      27 July 2025
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    Since the last update, there’s not been much improvement in the legs, eyes or hands. But Auri’s arms are doing well!

    She’s been on a tilt table once to help her ‘stand up’ for her heart health. She almost last 5 minutes before the tingling in her nerves got too much.

    The next day the physio team tried a different standing machine which she managed a few minutes in too.

    And today (Sat 26th) she got to properly sit for the first time in weeks! I took her on a 30 minute stroll around the ward in her boujee wheeled-recliner. Her arms got sore after half way so we had to go back to get pillows to put under to prop them up and support them. But otherwise, she did great!

    She has a third round of EMG on Friday. It’s small (sometimes big!) electrical pulses/shocks to different parts of her body to detect the nerve to muscle responses. So arms, legs, hands, feet, face. This isn’t a treatment and wasn’t necessary except to satisfy the neurologists desire to confirm GBS, as there’s still no official diagnosis despite the presentation. Essentially, once they’ve confirmed it, Auri gets sent off to a rehabilitation facility, or as she says, she’s off to rehab…

    She’s getting over hospital food. We keep sneaking tidbits in for her. It’s a catch 22 in that she needs to eat as she’s lost a lot of weight but she also needs to do the physio which makes her too tired to eat…unless it’s French vanilla icecream.

    One day at a time. One figurative foot infront of the other.

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    • 28/07/2025 by Sue

      Thinking of you all and especially Auri ❤️ xxx

    • 29/07/2025 by Robyn

      Thinking of you and these incredibly tough times. Would like to help in any way, please reach out - drop off some meals? Robyn (callums mum)

    • 30/07/2025 by Ellie

      Hi Staci, my mum has sent you a message on fb. Will likely be in message requests. My sister just recently was on holiday in Vietnam and fell ill with the exact same presentation!!

  • 20th July

      20 July 2025
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    Long awaited for update - sorry for the delay. It’s been a bit hectic around here.

    But the good news is, Auri got clearance to fly from the hospital. And the insurance medical advisors. And the air ambulance medical team.

    So, after a long (and very uncomfortable for Auri) flight, we are back in NZ. Severely sleep deprived. And already on to the second NZ hospital - Auri has been in more ambulances these last two weeks than the family combined!

    Her spirits have been high since getting home, even more so since having Caea back at her side causing absolute chaos.

    She’s still on a puree diet for the moment but she’s actually eating the food now. She’s also trialling being off of the iv fluids as she’s managing to drink enough herself.

    The range of movement in her arms has increased in the last week. It’s not perfect by any means - this will still be a long recovery for her - but seeing her head in the right direction in terms of progress, is something to celebrate! Legs and eyes are still pretty useless. But Rome wasn’t built in a day.

    She’s had lots of drs, neurologists, nurses swarming her since her arrival. Her little veins collapsed so they’ve had to use ultrasound to put a new line in for her meds. And there’s talk of another lumbar and more EMG - sigh.

    For anyone reading who wants to visit, Auri isn’t currently taking any visitors at the moment, as she is focusing on rest and recovery. But she is looking forward to catching up with everyone when she’s able to.

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    • 21/07/2025 by Sue

      so glad you are both back in NZ love and prayers to the family especially Auri

    • 22/07/2025 by Erin

      It's great to hear you are back home and things are improving for Auri. As a Mum, I can't even imagine the journey you are all on, but thank goodness you are now able to continue on it in NZ with strong support systems and medical care.

      Sending love and thoughts your way! Erin and the Tiny Nation team x

  • 15th July

      16 July 2025
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    It was a brutal day. As a mother, I just want to take away the physical and emotional pain I saw my baby go through today. And I couldn’t. I feel defeated - hats off to parents who have walked this road before, with this condition or others.

    And through it all she still finds the ability to be witty and humorous, bossy and demanding (wanting head scratches and fanning then telling us this is the life), sarcastic, and our families favourite word, facetious. She’s still my girl despite everything she is battling. I take all the hats off to her.

    Some slight improvements with a couple of small movements today when physio came by and compared to days previous. Auri can’t feel her legs so whilst she tells her brain to make them move, she can’t felt if they did or not. It wasn’t until I watched the physio session that the reality hit - this isn’t going to be a case of one day she wakes up and her muscles will be healed and we can continue on like normal, she has to re-learn every movement, with the end goal being learning to walk again.

    Yesterday we listened to a movie together and chatted. She dictated emails she needed me to send out. She asked lots of questions, some I had answers for and a some I didn’t. Constantly wanting to know what I’m typing and to whom. And then she had the cheek to gave me stick for struggling with not being able to flush toilet paper here…

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    • 16/07/2025 by Sue

      Love these updates, keep thinking of you and Auri love and prayers to you both and the rest of the family

  • 14th July

      15 July 2025
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    When the girls were little, I started telling them they were tough, brave & strong. It became our thing. I had them write each phrase so I could hang them in massive frames in our lounge.

    Auri is tough. Auri is brave. Auri is strong. Times infinity.

    As is Caea, their uncle & their aunty. Seeing first-hand the state Auri is in last night, realising what they’ve witnessed & endured in her first few days of hospitalisation, my heart hurts for them.

    So the update,

    - Auri’s left forearm has some movement side to side

    - Auri’s right forearm, has better movement, she can lift it a bit

    - If she concentrates really hard, she can move her big toe on left foot a fraction

    - She can slowly turn her head from side-to-side on the pillow

    - She can’t open eyes but can to a degree raise her eyebrows which opens her eyelids - one eye currently has no sight & the other is blurry double vision.

    Last night I brushed her hair & chatted. We read through donations & messages (she wants to know who to thank when she can), we talked about school (she’s worried about her attendance, her grades & how much work she will have to catch up on), her uni applications & her dog. I asked where she wants to travel to next & she immediately said home, to her own bed.

    This whole experience highlights how much you absolutely MUST take out a policy when you travel & if you’re travelling solo, think about how you’d manage in a situation where you couldn’t move or see. Don’t stop travelling just be prepared.

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    • 15/07/2025 by Sue

      I have been thinking of you and Auri

  • 13th July

      13 July 2025
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    Caea lands on NZ soil in two hours. I leave in 16ish. We could not have done this without each and everyone of you.

    Now to the main reason this page exists - Auri. In the last 24hrs

    - she's tried to eat some solid food but was a no-go.

    - she's had her fifth and final immunoglobulin treatment so now it's a case of sit and wait.

    - she's been moved from ICU to a ward (we aren't exactly sure why this has been done as the Dr seems to be avoiding visiting hours...) Possibly could be because there was a hold up waiting for travel insurance to approve more funds, it could be because someone else with a higher risk needed the bed, it could be because the 5 treatments came to an end or it could be they don't deem her breathing as huge a risk anymore.

    - in terms of movement nothings changed. Eyes still can't open, arms and legs don't work and she can't turn or rearrange herself in bed to get comfy. Because of this they've been giving her meds to prevent clotting.

    - the only new 'symptom' is her tongue (which is a muscle) has started to be impaired, so it's now impacting on her speech.

    - no extra testing has been done, just whacking her with the little rubber medical mallot to check nerve reactions.

    - still on IV fluids though it seems to be less than when she initially was admitted.

    I haven't been able to talk to or see Auri over video call in 5 days, as no phones were allowed in ICU but Caea had been making sure to pass on all messages of support and well wishes from everyone :)

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  • 12th July (but posted 13th - whoops)

      13 July 2025

    The latest hassle has been visas. I submitted my Vietnamese visa via their official government page and rang the NZ Embassy in Vietnam to ask for them to urgently approve it (online says 72hrs but on the phone they told me it would take 5 workingg days). Only to be told they can do no such thing and I would have to use a third-party 'agent' to get a visa in time however I would have to pay again and it would cost hundreds. Stuck between a rock and a hard place and not wanting to get to Vietnam and not be permitted in, I had no choice but to pay the extra for another, quicker visa application. Thankfully it was done incredibly fast!

    My eldest daughter travelled to Vietnam on her British passport and didn't have her kiwi one on her (as it wasn't needed!) so after talking to NZ Immigration, I've had to pay for a e-visa for her to get back in NZ, despite being a citizen.

    And my brother and his wife could not extend their Vietnamese visas and so before Caea left, they had to cross the border and apply for new ones and then re-enter Vietnam.

    Combined these visa issues have used a total of $1335 from the donation pool. So many little costs that never initially crossed my mind therefore were never calculated into how much id need.

    So again, to everyone, thank you for going above and beyond for my family. The amount of support these last couple of days has been next level and whilst completely overwhelming at times, I couldn't have made it through without it.

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    • 14/07/2025 by Sue

      You poor thing all this to deal with before you got on the plane last night

  • 11th July Update

      11 July 2025
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    Thank you seems to simple and not enough but it's all I have right now - thank you! From the bottom of my broken mama heart, from the entirety of my family, thank you.

    The words of support, encouragement and well wishes. The kindness, the love and the donations - I've been so incredibly blessed to be so very lucky in such an unlucky situation. A mammoth village just descended upon me within 12hrs of setting this page up. And I am so grateful.

    Last minute flights on the last weekend of the school holidays has proved a bit tricky and extremely expensive indeed. From the donations so far,

    $3220 is bringing my eldest daughter home on Sunday morning.

    $2820 gets me Vietnam bound on Sunday evening, in time to make one of the Monday visitation time slots at the hospital.

    Next task is to book some accommodation as close to the hospital as possible.

    As of this morning when I rang the ICU, Auri was again sedated. The broken English over the phone is quite difficult so I won't know anymore till Caea and Uncle get up there to speak to the Drs at visiting hours. They said she had a fever overnight, which she has had every night. Today will be day 4 of her 5-day treatment plan. Im unsure what tests they've got lined up for Auri today but I'm hoping she gets a break. Everything is so physically, mentally and emotionally exhausting for her right now.

    Am adding a pic of her a few days before she was admitted. She won't like it because her eyes are closed but that's the state of her ;)

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    • 11/07/2025 by Deborah

      Hello, so sorry for what you are going through. I have Vietnamese contacts in Hoi An who speak good English, please contact me if I can assist with anything. I know the area quite well. Thinking of you. Deborah

    • 11/07/2025 by Sue

      Thinking of you all at this time hugs xxx000xxx